View Full Version : Build up of Plaq behind your eyes?
01-24-2010, 02:09 PM
I had my eyes tested just befoore xmas and was told (and shown pictures) that they could see deposits of the hydroxichloriquin building up on the back of my eyes. The optition was not a specialist in Lupus as such but she sent me to see her colleage as he was still training and needed to sign off on certain things including problems caused by meds so it was bad enough that I became a test dummy for a while there.
Anyway, i then saw my Rheumy at the beginning of January and told them what had happened and he has now taken me off my meds and is going to arrange an appointment at the eye hospital here.
I was wondering if anyone else here has had a problem with these build ups and what their outcome was? I don't have any issues with my vision, just dry and tired eyes every now and then.
Thanks for any advise any of you can give.
PS. Sorry if there are lots of typos above but am typing this on the smallest laptop in the world!!!!
01-24-2010, 06:21 PM
I was told by my optho it is reversible if they catch it early.I am interested to hear what they tell you.
01-27-2010, 09:36 AM
Claire, keep us posted okay?
01-27-2010, 06:07 PM
I'm supposed to be getting an 'emergency appointment' but the hospital are apparently a month or two behind on typing their letters ~head desks~ I'll let you all know when I finally get an appointment through! ~hugs~
01-27-2010, 08:26 PM
so sorry to hear about this new discovery with your eyes. I have not had problems with this, but i do know that we are supposed to get regular eye exams while on plaquenil. It can cause problems with our eyes. I too am very interested in what the dr. says about this, so please keep us posted. I hope everything works out and that you are able to get back on your medication.....
01-27-2010, 10:07 PM
My neighbor had the same issue on Plaquenil and it was not reversable whatsoever. I have read that it's very rare to have toxicity; although they have documentation that after 10 years of Plaquenil the higher chances are for toxicity. They switched her meds to methotrexate. It sounds like they caught it in your eyes just in time. I was told by my rheumy that while on Plaquenil, eyes checks are a must every 6 months by an opthamologist. Please let us know what happens.
01-28-2010, 08:45 PM
I went to see my new ophthalmologist today since my eyes hadn't been examined since last June, back in Texas and this thread got me to worrying.
He decided to check out my dry eye problems first, then he will dilate my eyes and check the retinas next month. He agreed with my former doc that I definitely have dry eyes, probably from Sjogrens. He said that my left eye was "very dry" and that the right eye was "extremely dry". He's starting me on Restasis, and then wants me to come back in a month to check on if it is helping and to check on the retinas.
Has anyone else used Restasis? Does it help?
02-01-2010, 02:17 PM
It does work; it's just not the same as natural tears. I use the systane tears as well during the day. I finally had my lower eyelid drains cauterized after plugs kept falling out. Looking at having upper plug in but I don't want runny eyes either. It's a careful balance so I am going to ask for plugs adn then go from there. The plugs do help a lot more as does having them permanently sealed. I would do it again; although I still use Restasis. I hope this helps.
02-01-2010, 04:29 PM
Marla - restasis is working for me, though it took a few weeks. I read that one could dose up to four times a day so when I'm really suffering I dose more frequently than rxed. And also use plain sterile drops. I also have silicone plugs in my tear ducts which I have mixed feelings about but they are permenant -
one other tid bit that really helps: warm wet compresses to the eye. this is fleeting relief, but relief nonetheless.
02-15-2010, 05:12 PM
Just a wee update....
I went to the eye hospital and had all sorts of horrible things done.. anisthetic, dye and dialating drops put in... couldn't see straight for the hour and a half they left me waiting in the waiting room to be seen by someone else so couldn't even read a magazine. Anyway, long and short of the visit ended up that, yes they could see the deposits but they could be a build up of other things (although he was very vague on what exactly when I asked). He then tells me that its so rare to get that from Plaquinil that he would really doubt that that's what it was. I'm sorry but just because its rare doesn't mean its not that!? Right? Then he tells me that I can go back on the Plaq. His boss (my brain is fogging over the right word for him ~lol~) was off sick that day but he was going to double check everything with him when he got back but everything was basically fine. There are apparently other more indepth tests they could do but they take a lot of time to arrange and are very expensive. (like I care? I'm in the UK where we have the NHS, I won't be outright paying for them myself - I pay my taxes and NI like everyone else).
That was all last Monday and then today (a week later) I get a call to say that they need me in fairly quick and that they have an opening for Thursday this week. I've to go in and ask to be sent to the Photography department. I'll need more dialating drops... YAY ~sigh~ I didn't put myself back on the Plaq yet, probably just as well it seems. I'll update again after Thursday's visit!
02-15-2010, 07:39 PM
Good luck on that appointment, Numpty. Be sure to keep us updated.
I've been on the Restasis for a couple of weeks now, and I think that it is starting to help. We went to the movies on Saturday and I actually had some real tears at the emotional parts! I'll be seeing my ophthalmologist on Thursday, so I'll report too.
02-15-2010, 10:37 PM
Thanks for keeping us updated. You're right...just because it's rare doesn't mean anything. I hope it's nothing to worry about and that they are very thorough! I hate those dilating drops. Ugh! Can you take some music and headphones with you to help occupy yourself while you wait? Maybe take some audio books?
02-16-2010, 08:37 AM
When i went to see my rhuemotologist this week i asked him about the deposits and he agreed that this could be a problem and that is why he says i should see the eye doc every six months and my eye doc is very good. I hope that things will work out for you and i also have very dry eyes and use natural tears every day multiple times especially after using the computer for periods of time . Love and prayers Bonita
tiggerlishus - Heidi
02-16-2010, 12:14 PM
i have sometihng simular went to regular options appointment and she said she could see discolourtation at back of eye!! so shown letter to remu and hse has took me off plaquenil and reffered me for appointment to eye clini at hosp that was couple of weeks ago so think it will be month or so before i hear from them but i hated that dilation stuff feel like someones moved the floor too my ex went with me the last time ( abotu 7 years ago!)
on the getting checked regular basis i read up should get checked once a year and still yet my options tried to make it every 2 years ( i'm also in uk and on benefits so don't have ot pay to go) but put my foot down and said no i want it to be doen yearly!!
hope your problems gets sorted out soon keep us in formed!!! xx
02-16-2010, 01:06 PM
Hi, just found this thread, I am starting on hydrochlorquine at the end of next week. I have to get my eyes checked and then a blood test at the clinic. Thanks for sharing this, it helps to know what can happen and to be asprepared as possible.
02-17-2010, 05:52 AM
Good luck in Thursday, the photography isn't terrible... but it's not fun either... They truly do put a flash photo camera up to your eye and take photos (lots of them)! Make sure you have someone to drive you home afterwards as it's a bit more intense than just getting your eyes dilated as per usual. Although bringing headphones is a great idea for waiting and such while your eyes are dilated, you won't be able to use them during the photography as the technician will need to communicate with you continuously to ask you to look in specific directions. Don't sweat it, it's just an odd experience!
I speak from tons of experience... I have retinopathy of prematurity (retinal tears and damage due to being born 3 months early)... I've been seeing specialists my whole life.. Actually, I just went and seen my retinal specialist last evening to get some baseline info established as I just started Plaquenil in November 2009. His name is Dr. Puklin, he works at the Kresge Eye Institute through Wayne State University in Detroit, MI (I'm just all about the teaching hospitals!) I am already on a schedule to see him every 6 months due to my existing eye condition anyway, so we'll be checking on the Plaquenil at the same time. He seemed confident that the retinopathy that culminates from Plaquenil is quite rare and that they usually don't see it until the patient has been on it for extended periods of time (years and years). There are obviously people who develop issues earlier, there are always exceptions to the norm - as we all know! So I think the key is to be vigilant and make sure you're seeing a specialist that you trust.
He thinks, even with my existing problems, that as long as the Plaquenil is helping with my lupus symptoms, then he's ok with my staying on it for now. And frankly, I trust his opinion, more-so than any of my other doctors. He also said that the key to this is catching changes early. New floaters or flashes / streaky lights in your periphery are hallmarks of retinal distress and cause for an exam to ensure there's no retinal tearing. Your retina doesn't have the capacity to produce pain in the traditional sense that we all know it, so these visual manifestations are their way of telling us something isn't right.
02-19-2010, 04:21 PM
I saw my ophthalmologist yesterday, and he did the full work-up on my eyes - checked the retinas and everything. Everything tested out as completely normal - no build-up from the Plaq at all. He was happy that the Restasis is already starting to help, so I'm good to go until I see him again in July. What a relief!
02-19-2010, 05:19 PM
Would be very leary of the "it's probably not from the Plaquinil"...than what is it??? We have ALL been told to beware of that while on the Plaq....very curious to hear what they come up with at your next visit,,,go with a list of questions for them in an organized fashion.Best of luck.
02-19-2010, 06:19 PM
Marla - that's great news!
Andrea - I would tend to agree with you... I mean, if there are issues, the most logical step would be to remove a "potential" cause to see if it resolves! My situation is a bit different because of the pre-existing condition, but jeez, if anything were to change, my first move would be to stop the Plaq.
Numpty - How did your appointment go, and how are you feeling? I just today got over my lingering headache from being dilated on Tuesday =(
02-23-2010, 04:15 AM
Marla - Fantastic news and long may it continue! ~hugs~
Had my appointment and was totally unprepared for getting a canular (spelling?) put in and being injected wtih dye! >.< I have a horrible fear of needles and to make it worse, I have really bad veins (seems to be a family problem) so took them a couple of attempts to get one in. They tried the backs of my hands but kept missing the veins but finally got one into the side of my arm. The radiologist doing the tests said that he can see the yellow deposits and that my left eye is worse than my right. He also said that the doctor was leaning away from it being caused by the Plaq and that it wasn't active at the moment. So I'm wondering if I have the beginnings of macular degeneration even though I'm a bit on the young side. The Radiologist did say that they dont' expect to see what they're seeing until old age. I know that trying to self diagnose on google is never a good idea but I really can't help myself, I just like to be prepared!
So the tests were horrible and I don't have any results yet, that's the best update I can give just now but will let you know more once I do.
Other than that, I had to go see my general doctor yesterday as I now also have Strep throat so am feeling a bit sorry for myself ~lol~
Hope you're all well and thank you so so much for the support here, you all keep me going somedays I swear ~tight hugs for everyone~
02-23-2010, 02:19 PM
You sound like you need to curl up with some tea and just work on feeling better. I hope that you are on some antibiotics for that Strep.
I wonder how they can tell that the build-up behind your eyes wasn't caused from the Plaquenil? Can early macular degeneration be yet another fun symptom that AI diseases can bring on?
Can anything be done to reverse it? These are some questions that I would ask, if I were you.
Perhaps one of our wiser members, like SaySusie, may jump in here with some answers.
Meanwhile, take good care of yourself and get well from the Strep.
02-23-2010, 05:59 PM
Aw, sweetie, that sucks about the strep! I hope that's getting better quickly for you.. and at least the tests are done and over with for now, they aren't pleasant by any means, I'll be thinking of you and hoping for good news from your results. Take it easy and get in some you time. ((Hugs))
03-03-2010, 12:19 PM
Numpty, hope you're feeling better. Strep seems to be going around in this area also. I was just with the eyes guy on Monday. My vision has been changing very rapidly since I start on the Planquil. Marla I also have the dry eyes thing. He told me find out from the rheumy if fish oil or flax oil was okay, also gave me drops. No built up though. we went over the retinal pics together.
Hugs to all